Category Archives: Strength

Thiamine Deficiency – Life Disrupted

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My hope in sharing this story is that others who have similar symptoms might be tested to discover if they’re dealing with the same deficiency. It’s been a life-changing experience! 

A chronic illness had pushed me out of my secure life and job, into a land of chaos… of doctors, specialists, tests, and hospitals. I had to make a choice, A) keep trying to drive to work, trying to function sick and exhausted, or B) just stop and take care of myself.  My body made the choice for me.

Dealing with a severe loss of coordination, chronic fatigue, muscle weakness, neuropathy, random eye movements and double vision (ya, that was sooo freaky), and a long list of other symptoms, I was forced into not working and extreme self-care.  At first it was with a fair measure of resistance.  Throughout the experience, I kicked and screamed at the Universe, shouting inwardly, (and sometimes outwardly)  “NO, no way, you’re not stopping me!”  I did what I had to in order to try to keep going.  I stopped all social activities, ate dinner after returning home from the office and went to bed by 8:00, slept long hours, took naps at lunch time, changed my diet to all clean, fresh foods.  I cut back office hours, tried working from home occasionally, took more sick days… nothing worked.

Surprisingly, on paper my physical system was healthier because of lifestyle changes, however I still suffered with strange, chronic, debilitating symptoms, and my doctors were baffled.  I was now using a cane for walking, a shower chair to shower, and I had stopped driving, so family was having to take me for appointments and tests.  My body said no more.  When I realized that resistance was futile (stolen phrase from Darth), I decided to surrender to whatever lay before me (very Yoda like), and to just trust the process.  I kept a sense of humor through all of this despite the circumstances.  It has been my coping mechanism.

After the long line of doctors and specialists, hospitals and tests, I was referred to another specialist.  This time a neurologist.  He discovered that I have been suffering with a rare deficiency that does not typically appear in the U.S.  I am deficient in thiamine, or B1, which has been the cause for the chronic physical symptoms (referred to as BeriBeri disease in the tropics).  Most U.S. cases appear as a result of alcohol abuse (I don’t drink alcohol), or gastric bypass patients (nope, I haven’t had this surgery).  For an as yet undiscovered reason, my body stopped absorbing the vitamin from food, and started declining in its functional abilities.  The recommended daily allowance typically obtained through food is 1.1 mg in the U.S.  Treatment for me is 100 mg. per day.  this is high dose that I may take for the rest of my life.  Time will tell.

It could be worse.  Advanced thiamine deficiency in those individuals who do not partake of spirits manifests as a disease called “Non-Alcoholic Wernike’s  Encephalopathy.”  Scary stuff!  If this very wise neurologist hadn’t discovered the deficiency, I would have further declined, with loss of memory, hallucinations, and finally coma or death.  (Whew! I am one fortunate soul!)  After three months of treatment, I am seeing improvement in symptoms and am very slowly returning to living a more normal life.  I am told that in six to twelve months, I will see even greater improvement in physical health and abilities, and perhaps a full recovery.

I’ve read a couple of firsthand accounts of individuals in the U.K. who had developed the more severe symptoms as a result of advanced thiamine deficiency.  In some cases they were wheelchair bound with symptoms so severe they were not able to participate in active daily living.  With many trips to a variety of specialists, they too were fortunate enough to come across the wise doctors who found this rare deficiency, and started treatment, literally saving their lives.  It’s become clear that the test for this deficiency is not common.  It does make me wonder how many other people out there suffer with thiamine deficiency, have the symptoms and have not been tested.

I’m interested in hearing from others who live with this deficiency and are receiving treatment.  Please share your story.

 

 

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Crosses

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Months and years of family and health challenges left me exhausted with more questions than answers. What the heck Universe, what’s the story? “What doesn’t kill us makes us stronger!”  Hmm… does it, because I was pretty darn wiped out and not feeling strong in any way.  Good thing I have an awesome sense of humor and strong belief that we are more than this…  While gabbing with a friend on FaceTime, the collection of  crosses on my wall showed up behind me on the screen. She noticed the crosses. “They’re pretty aren’t they?  Each one unique and different.”  I said.  She asked if I had named them,  (in other words, the physical “crosses” I bear).  Interesting perspective, a perspective I had not considered and made me laugh.

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For me, crosses represent the intersection of Spirit with matter in order to experience physical life as human.  However, I sure appreciated my friend’s fresh perspective.  The challenges presented over the many years and months could very well be named as my “crosses.” They are the intersection of Spirit experiencing life in all of its Fullness.  Living experience.  Energy of the Collective Whole, Spirit, God in all of Its glory, living out unique, creative, beautiful experiences.  Some tough and challenging, others easy and fun, still others wild, out-of-control crazy!  So hold on tight! We are witnesses and companions to the unfolding and manifesting Spirit.  There will be good times and not-so-good times on this journey. All part of our experience as more than physical, as more than this…

“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”  ~ Louise Erdrich, The Painted Drum

Myriad of Things

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God

Disguised

As a myriad things and

Playing a game

Of tag

Has kissed you and said,

“You’re it—

I mean, you’re Really IT!”

Now

It does not matter

What you believe or feel

For something wonderful,

Major-league Wonderful

Is someday going

To

Happen.

~ Hafiz, “You’re It”

 

Tag. You’re IT!  Do you believe something wonderful, major-league is about to happen?  I always have.  I want to keep believing.  These days it’s meant believing with a whole bunch of challenges.  Health challenges, financial challenges, life-purpose challenges, all abounding around.  In the midst of it all I see and feel God, as a myriad of things, encircling me.  In the presence of the people I am with daily, in the winter sunshine pouring through my home office window, in the trees wearing the winter snow, in my pup’s wiggly butt as he brings me his favorite toy for playtime, these, each and all living God.  So maybe someday is not here yet, and the major-league wonderful is still coming.  In the meantime, the myriad of things gives me joy and keeps me going. Tag “You’re IT!” Living God.

 

You are the Hub of the Wheel

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hub of the wheel

Imagine yourself as the hub of this wheel that daily life revolves around, make the spokes of the wheel as connections to those you care for most. The wheel’s activities, its responsibilities surround you, spinning and spinning through each day, week, and year. You are central, the key to keeping it all balanced. Recognizing this, it’s important you care enough about yourself in order to preserve your mental, physical, and emotional health. And consider this… when you’re out of sorts, the wheel’s balance is too. If you haven’t taken the time to give yourself the nurturing you require, the wheel can lose balance and begin to wobble!

Some years ago while on vacation, I recognized my own wheel-wobble. I wondered why I couldn’t put more oomph into just having fun with my family. Doing my job, both jobs, 1) taking care of my family and 2) working a full-time job, took every ounce of energy I had. I had nothing left to give. Fun, what was that? Playing cards or a board game, going to the museums, taking walks, watching movies just didn’t seem as needed as keeping the house clean, doing the laundry, running the errands, getting my youngsters where they needed to go, you name it, I was doing it. The “work” side of the wheel was heavier than the fun side, and I was wobblin’ big time!

Who suffers when we don’t care for ourselves? Right us, and not just us, but everyone we come into contact with. We are home base for our family, the safety net everyone falls into. It’s important for us to be rested, happy, healthy and nurtured. Use the lists you created from the last blog, “Me Time,” to help you do this next exercise.

ACTIVITY: HUB OF THE WHEEL:

  1. Draw a circle or other shape in the center of a blank sheet of paper and write your name in the center.
  2. Choose another color to draw spokes outward. Label each spoke a responsibility or commitment you have to someone, i.e. husband, wife, significant other, children, pets, church, school committees, civic organizations, fun activities with friends, etc… Anyone or anything you have day-to-day or week to week contact with should be included. Whatever takes time in your life, write it in.
  3. Using another color, draw branches off of each spoke. These will represent duties and responsibilities you perform regularly for that individual, pet, or organization.
  4. Finally, choosing one last colored marker or pencil, encircle your responsibilities connect them one to the next, surrounding the spokes like a tire revolving and spinning on the hub.

Now take the time to look over your wheel and reflect. Who do you spend the most time with? Who or what is an energy drainer? Who or what do you wish you might spend more time with? What do you want to change? Use this visual tool to evaluate your life activities. Do it every week if necessary to get a visual for where your time goes. Turn the autopilot off and make the conscious decision to LOOK at what you do. We will use information from this exercise in later modules to help change your focus to areas you have passion for, or goals you wish to take steps toward.

JOURNAL ACTIVITY:

  1. Who or what do you spend the most time with?
  2. Who or what do you wish to spend more time with?
  3. What do you want to change?

Kudos for this activity:  A workshop participant emailed me several weeks after doing this particular exercise to tell me that he had taped the wheel to the refrigerator for the entire family to see. He wrote, “The kids were amazed at how much I do on a day-to-day basis, other than going to work. After studying my “wheel,” they decided to pitch in to help where they could. Thank you for bringing the awareness of how much I do not just to me, but to my family as well.”

Give it a try. Post your “Wheel” and see what reaction you get from family members, friends or colleagues.

 

Primary Caretaker – Me time

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Me time

Art from lineleoff.com

 

Over a 25 year period, I’ve had the opportunity to facilitate self-awareness workshops. What I found is that there are countless numbers of us, both women and men, who have taken on the role of primary caretaker and as a result have put aside our own self-nurturing and self-care. This is one of the most important things we can do for ourselves to develop a life lived with joy.

In some of these workshops, taking care of oneself seemed an almost alien concept to some. “What do you mean by self-nurturing?” They would ask. We raise our children while maintaining a healthy environment for them. We promote education, gently guiding family members in particular directions when a talent is recognized. We are there to “lift up” our spouses, significant others, friends and colleagues when they’re blue. We rise in the morning thinking of others. We go through each day, each hour, sometimes each moment planning how we will care for our family members, friends, or coworkers. We are the nurturers of the world!

I am mother to five children (now ages twenty-one through thirty-eight). When they were younger, I remember getting up in the morning before anyone else was awake heading for the shower already thinking of the dentist appointments, what to cook later for dinner and when? How would I get my then sixteen year old to a German club meeting and still get to the event I had volunteered for? Mind moving on and on, all of these thoughts occurring within a moment or two’s time… once resolved, I moved on to the other challenges I’d face that day.

Back then, time for my own interests was difficult to find. Whether to begin doctorate work became an anxiety ridden decision. Who would help with evening homework if I wasn’t home? Would my sixteen year old bring a troop of friends over while I was out? How would I prepare any kind of meal before I left for the evening? And finally, was the coursework something I even wanted to do? Or was I feeling pressured by my peers and employer? Talk about stress. One simple decision became a masterpiece of confusion and anxiety.

Does this sound familiar to you? Knowing how to care for ourselves, how to journey through each day being gentle on ourselves, being just as considerate of our “self” as we would be toward a family member, friend, or coworker… this is what we need to work toward and maintain. From a young age many of us were taught to be caretakers, we were conditioned to believe that it was our responsibility to care for others while our own needs were put aside. Today, many of us are caring for children or young adults, while very possibly caring for aging parents at the same time.

When you have a few minutes, try the following activity. What are some of the things that you do for others on a daily basis?

DO: List what you do for other people on a daily basis, right down to the smallest detail. 

Here’s an example of what a typical day looked like for me while raising my children and working a full time:

  • Cooked breakfast before school and work
  • Cleaned up the dishes and started the dishwasher
  • Made school lunches and my lunch for work
  • Threw in a load of laundry in both the dryer and the washer
  • Made beds
  • Worked all day at the office
  • Fed the birds
  • Paid Bills
  • “Helped” the kids do their chores
  • Took recycling out to the garage
  • Did the banking
  • Helped my oldest write his resume
  • Called a friend in need
  • Stopped at the store to pick up household goods
  • Worked on insurance benefits

My list was for a full day and I’ve most likely forgotten several things since that time. When you listed your day, you probably found your own list growing longer and longer with responsibilities that you typically do on “autopilot” and promptly forget. What I ask you to do next is more of a challenge. How much of your day is spent doing something for yourself, something rejuvenating or stress relieving? Something educational or a hobby you enjoy?

DO: List your own self-nurturing activities now.

I know you listed fewer activities. And you’re not alone! The majority of the people that have attended my workshops have had shorter lists as well. If you aren’t nurturing yourself, if you’re operating on overload… Not caring for you can lead to stress-filled days, resentment toward others, and finally burnout. What I’m suggesting is that you take the time to attend to your own well-being, just as you do for so many others.

Are you over-doing? It’s time to take steps toward self-nurturing. You are worthy of the same care you provide to others. You are just as important… just as special. Incorporate a reality check into each morning of your day. Evaluate what you want to happen in the day and how you’ll put some “me” time into your schedule. Set that time aside and stick to it as much as possible. Check it off at the end of each day. It doesn’t have to be some long impossible list. Here’s an example of my activities list. I would choose one or two from the list to incorporate into the day:

  • Work out
  • Spend time walking in nature
  • Sit at the local bookstore and sip tea
  • Read for 30 minutes after dinner
  • Write uninterrupted for one hour
  • Answer friends e-mail
  • Lunch with a friend at work
  • Sketch in my journal
  • Read and post affirmations
  • Attend a cooking class
  • Join a book discussion club
  • Have friends over once a week to just sit and gab
  • Refurbish a piece of furniture
  • Garden
  • Listen to music
  • Meditate

What did you put on your list? Choose one activity close to your heart and begin incorporating it into your day or week. Make it formal by putting it on your calendar or daily schedule. Block the time out for you! I’d love to hear some of the activities you’ve incorporated into the day or week just for yourself.

Next week: “You are the Hub of the Wheel,” an activity that helps create a visual snapshot of your life activities and responsibilities. Have a fabulous week!

Conscious Decision Making

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Life By Design nl

 

In February 2013, I had a lucid dream experience where I was consciously creating in the fabric of space and time. I was present before the canvas of matter creating images with thoughts and gestures. Since 2013, there have been many mornings when I’ve actually awakened with my arms and hands up in the air gesturing as if I am still creating from the “other” side of the fabric, spirit body on that side, physical body on this side. I know that with regular practice through meditation, lucid dreaming and conscious awareness, I can change day-to-day physical reality creating a more desirable, joy-filled life-path. As a mystic, I know that we are, we live, simultaneously as both source-self (spiritual being) and the physical manifested self, experiencing life. One might look at the physical self as an avatar of sorts, a vehicle that allows us to experience living out all sorts of adventures through a physical body! In short, we live between two worlds.

Naturally and unconsciously through choice, we have created daily experiences using thought and action. However, many of us are thinking, acting, and creating experiences running on “autopilot,” allowing life to occur, to just happen… and as a result, often left wondering why things aren’t quite the way we’d prefer. How do we create change?

The simple answer is to turn off the autopilot. To be mindful of thoughts and consequent actions. To take responsibility for, and examine the choices made… and then choose differently where possible. We can create a new reality, with conscious mindful thought, conscious mindful decisions, conscious mindful planning, and conscious mindful action.

Will daily life then be picture perfect? I can say from experience that it will not because some of the choices made up until now have resulted in the experiences each of us are currently living through. However, I can say it will be better and that circumstances can be changed. Life is better because you will have become fully engaged. Daily life events are no longer just happening to you because you will have become a conscious, mindful, active, participant in its creation.

How to start? Over the next couple of months, each week I will introduce a set of self-exploration exercises to assist in becoming mindful of current life situations, where your focus has been, where it’s at today, how to make time for self-nurturing, and how to manage time and plan mindfully. These simple no-nonsense self-discovery activities are meant to be used over and over as you cycle through decisions, discover new facets of self, choose goals and take steps toward change. These activities have been used in workshops for over twenty years, basic, tried and true.  They are focused, personal, and will nudge you toward self-nurturing, as well as personal and spiritual growth. Next week: Module One – “Primary Caretakers.”

Soul Family

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soul family

 

Where do you find your strength? What moves you forward, upward, onward, possibly inward despite what’s occurring on the day-to-day life path? Who or what inspires you?

At any point over the last several years. I might have given up, stopped working completely, crawled into a hole, thrown in the towel on every day life, surrendering to the debilitating physical illnesses that insidiously sideswiped me, throwing me off my comfortable life-path. I crashed, but didn’t burn. I refused to lay there and got right back on life’s roads… repeatedly. Wouldn’t have any of it. No. Wouldn’t given in, wouldn’t give up. But I wasn’t alone, my “soul family” walked beside me.

Reflecting on what occurred over the last several years, the people I came into contact with, those family and friends that continue to be present… all has been instrumental and necessary. Looking at it all from a different, big picture perspective has provided insight. The insights as a result of my experiences were waiting in the wings whispering for attention. Some so in my face and obvious, I missed them completely! Other lessons quietly moved me from one step to the next and the next and the next, where then… a destination magically appeared, perhaps not what I expected or what I might have chosen, but a destination nonetheless. Then. When I’d land, and think o.k. I’m all right for now, surprise! A vortex of chaotic activity appeared again swirling into yet another series of events.

I learned patience and true self-care. As a result of dietary and nutritional changes, my overall health improved. I learned how important it is to get the sleep my body requires (not what I thought I could get by on). Much of my life I’ve acted as if I were Wonder Woman, able to face and overcome any obstacle at any time, doing whatever it took. Now I understand this is an unreasonable demand on the mind, body and soul. Wonder Woman behavior can cause what I call “body crash” and “soul disconnect,” something I’ve experienced first hand and continue resolving today. I now realize and accept healthy limitation. Each day I am better and better in every way. Progress has been a little slower than I’d prefer, even so it has appeared and I’m a grateful.

Soul family members walked this path with me, sharing in the experiences… my adult children, siblings, friends, work colleagues doctors and other medical professionals, throughout the toughest times, they held me in positive thought and supported me with encouraging words and actions (for which I am ever grateful). We’ve talked and shared what it means to truly practice care for the mind, body, and soul. The health challenges I’ve faced have brought about large life change, change I know I would not otherwise have made. The challenges have been the impetus for action, new ways of doing, thinking, behaving, and believing… All of which unfolded working hand-in-hand with others. We all played a part in the unfolding of increased wellness… without them, without my soul family, I would not be where I am today.  You know who you are, Thank You!